Markus and me, we made the experience that the situation after the diagnose is different for the older concerned and much more difficult for visually impaired Youngsters.
The family does not know how to get along with the new situation. From one moment to the other many new questions do appear.
These questions are mostly mixed up with the parents opinion that they are guilty for their child's handicap.
On the on hand the whole family is not very confident with the handling of the RP and so they stop talking about it. On the other hand the teenager dos not want any help of his parents and prefers to stay alone with his problem.
At this point of time also friends and the boy- or girlfriends are not able to realise the situation and to give useful help.
The young person with RP is helpless, alone with rage, questions, sadness and fear of life. My situation was the same when I was thirteen. I could not imagine that I was "handicapped" or "disables" or that one day I could loose my sight and go blind.
I lost any perspective to have3 a normal life.
When I first came to a meeting of a RP-group, I did not meet any person in may age. But fortunately Axel, a man of 28 years, came into our regional group. He was the first person who really understood my problems - just because he was in the same situation like me !
Ant the best thing at all was that we learned to laugh about us the RP and all the little misadventures in our life with R.p.
In September 1997 Markus and me started to represent the youth of the Pro Retina Germany.
In our opinion it is very important to meet other people with RP. We want to discuss and have an exchange with the others. It is the same as in our youth group. But the problems for the youngsters are different, we have other centres of gravity. The choice of education and job, leisure, mobility, ... the darkness in a disco ..., partnership - how can I find a friend/partner who accepts me completely, even with my handicap - and also the question of having children or not.
Every year in September the national youth group will meet at the annual general meeting of the Pro Retina.
In springtime we organise a whole weekend - every time in an other region of Germany, 1997 in Cologne (West Germany), 1998 in Erfurt (East Germany), 1999 in Münster (North-West Germany), 2000 in Heidelberg (South Germany) and 2001 in Nürnberg (Bavaria)
Simone founded a regional group in the area called "Ruhrgebiet". They meet up for an afternoon at a weekend - four times a year with 10 to 15 younger persons with RP. We try to encourage other members to follow the example. This was the first one in Germany.
Actually we have a lot of regional groups only for young people with regular meetings and other events. For example the youth group Munich (Bavaria) visited Prag, (Czech. Republic) for a few days in 2000.
In other areas with small population we have contact persons for the youngsters.
Twice a year we are publishing a youth magazine called "Duchblick" (means look though resp. grasp) about a great variety of topics for young people.
We plan to publish a brochure especially for youngsters. The basically text for this leaflet is a theoretical text from Elizabeth Baid from England. about young people with RP. The heart of this booklet will be the reports which we have collected from young members about their experience with RP. This could be funny stuff or serious and thoughtful subjects.
Manuel Ott established a homepage for German youth group in the Internet under www.pro-retina-jugend.de
There you can find reports from the regional groups, news, dates and reports. This homepage is every time very up-to date and will be modified permanently.
We want to reach the young affected person. We want to have the confrontation and the explanation with our handicap - we want to open the possibilities in life and job and want to give some help and support to find these things.
Actually we have about 500 young people (14 - 35) with RP in our association.
For further questions please do not hesitate to contact:
Simone Brucker
Haderslebener Str. 9
44789 Bochum
Tel.: +49 234 / 3254900
email: simone.brucker@gmx.de